We would like to hear about the experiences of patients with rare conditions who have identified difficulties in accessing specialised services in Wales.

Dear member,

One of our current projects aims to raise awareness and improve access to specialised services and medicines for patients in Wales with rare conditions. As part of this, we are looking for help from patients and carers as we want to understand the current issues that exist in accessing specialised services in Wales.

How can you help?

The project will create a network of patients, families and patient groups across Wales working together to improve health services for rare conditions. Please email me if you would like to join this network: emma@geneticalliance.org.uk. The network will have an opportunity to shape health service policy and influence decision makers in the Welsh Government.

I would like to hear about the experiences of patients with rare conditions who have identified difficulties in accessing specialised services in Wales.

These issues could relate to problems in gaining access to services which are provided by specialist centres in England or for medicines where your Local Health Board refuses to approve funding for medicine that has been recommended for use in Wales.

If you are interested in joining the network and being involved with this project, please email me and we can organise a convenient time to speak. If you would prefer to phone, I am in the office between Tuesday-Thursday and I would be very happy to speak with you then.

My contact details are included below. I look forward to hearing from you.

Emma,

Development Officer for Wales Genetic Alliance UK & Rare Disease UK

For Further Information, Contact: Emma Hughes, Wales Development Officer.